new

[Guest guest]

Hi Kim,

and welcome to this forum, I am sure you'll get at lot of support and advices in here, people are terrific here! :-)

Here's my story:

I was diagnosed with Crohn's Disease in June 2007. Prior the diagnose I had a gastroscopy, a colonoscopy and a barium x-ray. I also had a fecal test showing inflammational activity. The barium x-ray concluded that there is a narrowed area in my terminal ileum. This area has during the last 3 years been causing periodical vomiting with severe cramps, so called partial obstructions. The obstructions often lasted for 8 - 10 hours and I often experienced those twice a month. I had a Crohns flare from april to june. This flare gave me increased diarrhea, 5-8 times a day, increased daily pain, bloating and cramps. I even had increased partial obstructions. I often experienced muscle cramps in my feet, legs, abdominal area, waist, arms, hands and fingers. I started using prednisone immediately when diagnosed, due to the flare going on at that time.

Prednisone helped me for a while, but when tapering off of it, I got gradually worse. My GI informed me that he wanted to give me a surgery during the fall, he hoped that prednisone would bring me in remission to hopefully avoid a surgery. The specialists are often skeptical to surgeries like this, because it's most likely that the inflammation will return in the area where they have done a resection. Often this happens within a couple of years after the surgery.

I searched the net, and by a coincidence I stumbled over a Norwegian MS forum discussing LDN. I started using LDN in Sept. 2007, and the rest is history.

I got better the first day after starting with 1.5 mg LDN. All my bloating was gone. So was the pain that always wake me up too early in the morning. While increasing the dose to 3.0 mg a couple of weeks later I got even better. During the first week on LDN the D was gone. I used to have partial obstructions a couple of times each months, which led to severe pain and vomiting that always continued till the early morning, giving me too unbearable pain and cramp in the abdominal area. The lack of electrolyte balance gave me cramps in my feet, legs, hands, arms and waist area. Usually these cramps occured in the middle of the night and kept me walking up each hour the whole night. I had one narrowed area, eventually more, im my small intestines, due to either stricture or inflammation. When I started to use LDN the electrolyte balance was ok after just some weeks, and the inflammation went away giving me normal sized small intestines.

My GI was surprised that I went in remission while using LDN. He didn't believe me when I told him about this medication, and stared at me as if I had grown two heads. Well, he had to put away his knifes and suggested me to continue using those pills, because, as he said, they obviously does something to your inflammation. He got calm when he red about the Penn State trial, and the pilot done by professor Jill and her research team. I have now used LDN for 8 months, and I am still feeling really well. I don't need any other medication, and I am able to tolerate more food than before. I haven't had one partial obstruction since sept. 07. Prednisone did not calm down the inflammated terminal ileum, due to the last partial obstruction that occured when my prednisone dose was at it lowest.

Having Crohn's with my kind of symptoms means heading a surgery. I know that I am still heading one, but LDN helps me getting a delay. I have of course decided to continue using LDN after the surgery, to prevent heading another one within short...:-)

Ingrid

[low dose naltrexone] newhi my name is kim and i am 41 years old and just recently diagnosed with crohns disease, does anyone know anything about it and what medicines and therapies that work?------------------------------------

[Guest guest]

I started DS on a probiotic and basic broad spectrum enzyme to begin with. I

currently use Kirkman's Pro Bio Gold (probiotic) and Digest Gold (Enzymedica).

You can get a lot of information at www.enzymestuff.com and www.danasview.net.

DeFelice's books were GREAT for detailing information without overwhelming

you.

Best of luck! Research and ask as many questions as you have!

Dana C.

-------------- Original message --------------

From: Birch <mompuzzle@...>

Hello I am new to this. & nbsp; My son has been on a GF/CF diet for about 3 months

now. & nbsp; He does not take any enzymes or supplements. & nbsp; Could anyone help

get me started. & nbsp; Dont know where to go from here. & nbsp; Even on GF/CF still

has loose stool.

[Guest guest]

>

> Hello I am new to this. & nbsp; My son has been on a GF/CF diet for

about 3 months now. & nbsp; He does not take any enzymes or

supplements. & nbsp; Could anyone help get me started. & nbsp; Dont know

where to go from here. & nbsp; Even on GF/CF still has loose stool.

Here is my site section for information.

http://www.danasview.net/parent3.htm#supplements

Dana

[Guest guest]

Hi Geri,

Welcome to the group. Everyone here is great. I have learned so much and

its great to be someplace where everyone can understand the pain you are in.

Heidi M

On Sat, Jun 21, 2008 at 12:59 PM, Geri <gerijackson49@...>

wrote:

> Hii everyone, I am new to this group. glad to see all the support out

> there I have had RA for two years now and am considering joint surgery on my

> hand, does anyone have any pros or cons on the subject Thanks Geri

>

>

[Guest guest]

Thanks for the reply Heidi. I was beginning to think no-one was going to

acknowledge me, Geri

From: Heidi Mendelsohn <hmendelsohn@...>

Subject: Re: [ ] new

Date: Saturday, June 21, 2008, 6:12 PM

Hi Geri,

Welcome to the group. Everyone here is great. I have learned so much and

its great to be someplace where everyone can understand the pain you are in.

Heidi M

On Sat, Jun 21, 2008 at 12:59 PM, Geri <gerijackson49@...>

wrote:

> Hii everyone, I am new to this group. glad to see all the support out

> there I have had RA for two years now and am considering joint surgery on

my

> hand, does anyone have any pros or cons on the subject Thanks Geri

>

>

[Guest guest]

Good morning Geri,

The one thing that I learned here was that sometime my questions get lost

in the shuffle. I do think you will find this a great place to come for

support and understanding. I hope you have a painfree day.

Heidi M

On Sat, Jun 21, 2008 at 3:37 PM, Geri <gerijackson49@...>

wrote:

> Thanks for the reply Heidi. I was beginning to think no-one was going to

> acknowledge me, Geri

>

>

>

> > Hii everyone, I am new to this group. glad to see all the support out

> > there I have had RA for two years now and am considering joint surgery on

> my

> > hand, does anyone have any pros or cons on the subject Thanks Geri

> >

> >

[Guest guest]

Hi Geri:

Welcome, welcome to our wonderful group of caring people. I have had RA for 5

1/2 years. Sorry I can't answer your guestion about hand joint surgery, as I

have only had knee and hip total replacements. I hope you will be feeling better

soon, and have pain free days.

Hugs,

Barbara

>

> > Hii everyone, I am new to this group. glad to see all the support out

> > there I have had RA for two years now and am considering joint surgery on

> my

> > hand, does anyone have any pros or cons on the subject Thanks Geri

> >

> >

[Guest guest]

Thanks Barbara,Hope you are having a good day yourself.Geri

>

> > Hii everyone, I am new to this group. glad to see all the support out

> > there I have had RA for two years now and am considering joint

surgery on

> my

> > hand, does anyone have any pros or cons on the subject Thanks Geri

> >

> >

[Guest guest]

Hi, ,

 

The length of the waiting list determines how long it will take to get into Dr.

G. We put our son on the list in Nov. 07 and he was in by the end of January 08.

I know individuals who've waited much longer though. Regarding the neurospect

scan, Dr. G does not do them on all patients. My mild/moderate son had one done,

but my son with Asperger's did not. You may want to wait until you see him. The

scans are very expensive and insurance doesn't always cover them.

 

Dr. G prefers that you use Dr. Uszler at Santa Imaging. Yes, they will

use sedation if necessary. I would check with your insurance company to see if

the procedure is covered. If Dr. Uszler is a preferred provider, make sure

you ask them to bill your insurance company directly because if you pay him

upfront, you will not be reimbursed at 100%. In addition, if you use sedation,

make sure Dr. Uszler uses a preferred provider with your insurance company.

Otherwise, the $750 sedation charge may not be covered. The total cost of the

procedure for our son was around $2500.

All the best,

 

Robyn

From: heatherloganhomes <heather646mcd@...>

Subject: new

Date: Wednesday, July 30, 2008, 10:33 PM

Hi everyone,

I'm really interested in taking my daughter to see Dr. Goldberg and I

just finished my paper work. How long does it take to get in? I was

also wondering where I can take my daughter to get NeuroSpect brain

imaging that he recommends? Do they put the kids under to get the

scan? We are in Southern California.

Thanks,

[Guest guest]

Hi Robyn -

I was wondering what kind of progress you've seen with Asperger Symptoms?  And

how old is he?

Thanks-

new

groups (DOT) com

Date: Wednesday, July 30, 2008, 10:33 PM

Hi everyone,

I'm really interested in taking my daughter to see Dr. Goldberg and I

just finished my paper work. How long does it take to get in? I was

also wondering where I can take my daughter to get NeuroSpect brain

imaging that he recommends? Do they put the kids under to get the

scan? We are in Southern California.

Thanks,

[Guest guest]

Today is not a good day to ask that, LOL. He just had a complete meltdown. The

progress we've seen in is not as notable as the progress we've seen in

Noah. That being said, we have seen progress. He is less emotional, responds

more readily to requests, and seems more " with it. " He's also become better at

paying attention in class, checking his work, etc. We've also almost completely

cleared up his eczema, which he's had for years. only started the

protocol in April.

 

HTH

 

Robyn

From: heatherloganhomes <heather646mcd@ hotmail.com>

Subject: new

groups (DOT) com

Date: Wednesday, July 30, 2008, 10:33 PM

Hi everyone,

I'm really interested in taking my daughter to see Dr. Goldberg and I

just finished my paper work. How long does it take to get in? I was

also wondering where I can take my daughter to get NeuroSpect brain

imaging that he recommends? Do they put the kids under to get the

scan? We are in Southern California.

Thanks,

[Guest guest]

Hi Steph,

Welccome to the group!!!!! i take a sleeping pill at night - it at

least allows me to sleep and the morning i just have to wait out the

pain and stiffness. I do recommend the sleeping pill though - it does

seem to help me stay asleep.

[Guest guest]

Steph,

Welcome to our group. I have yet to learn how to control the pain and

stiffness. I know that when I am on certain drugs, both are much

better. I am waiting now to start Enbrel. I have heard so much good

about it, I just know it will be the trick for me.

Sorry that I don't have much input. I did want to greet you and tell

you that this is a wonderful group of caring people.

Shirley

--- In , Shauna Zelinger <funkydiva00@...>

wrote:

>

> hey everyone,

> my name is steph and i am new to the group. i have had arthritis for

years due to the crohn's disease i had for 15 yrs. i was wondering how

anyone puts up with the pain and how they controll it during the night

and in the morning. thanks, steph.

>

>

>

>

>

[Guest guest]

Shauna

Welcome to the group. Its a great place to come and talk with those who

know the pain you are feeling. As far as handling the pain. I thin its

different for everyone. The new meds Enbrel, Humera, Remicade do work for

some. I take Humera. I think that you just have to give in when the body

says its time to rest ( that's easier said tan done)I wish there was a quick

fix for the pain but unfortunately there isn't. I use a lot of heating pad

time when I am unable to use my hands or arms. That seems to be the worst

area for me most of the time.I take my pain pilss and try to rest. At night

I take Ambien to sleep it is the only thing that will allow me to

rest.Again, welcome to the group.

Heidi M

On Wed, Aug 20, 2008 at 5:00 PM, nana2livi <s.p5315@...> wrote:

> Steph,

>

> Welcome to our group. I have yet to learn how to control the pain and

> stiffness. I know that when I am on certain drugs, both are much

> better. I am waiting now to start Enbrel. I have heard so much good

> about it, I just know it will be the trick for me.

>

> Sorry that I don't have much input. I did want to greet you and tell

> you that this is a wonderful group of caring people.

>

> Shirley

>

>

> >

> > hey everyone,

> > my name is steph and i am new to the group. i have had arthritis for

> years due to the crohn's disease i had for 15 yrs. i was wondering how

> anyone puts up with the pain and how they controll it during the night

> and in the morning. thanks, steph.

> >

> >

> >

> >

> >

[Guest guest]

Steph:

First, hello and welcome. You will find a lot of information and support in

this group.

I have Ankylosing Spondylitis, RA's close cousin, and a host of other things

caused by severe burns I sustained while fighting a wildfire.

You ask about pain and what people do to combat it. Many people with arthritis

use DMARDS, (disease modifying anti-rheumatic drugs), SAARDs, (Slow-acting

anti-rheumatic drugs), TNF, (Tumor Necrosis Factor), blockers and biologics to

help reduce disease activity and thereby eliminate some of the pain. A lot of

us, me for one, take narcotics. I am on quite a few schedule II narcotics,

since I cannot take any of those other types of drugs I mentioned.

I hope you find some support and relief from the pain soon.

--

Dodge

A skeptic is a person who, when he sees the handwriting on the wall,

claims it's a forgery.

Read my blog at:

http://jumpthis.wordpress.com

---- Shauna Zelinger <funkydiva00@...> wrote:

=============

hey everyone,

my name is steph and i am new to the group. i have had arthritis for years due

to the crohn's disease i had for 15 yrs. i was wondering how anyone puts up with

the pain and how they controll it during the night and in the morning. thanks,

steph.

[Guest guest]

Hi , it sounds like you are all doing your best at this point to

help your grandson by getting evaluations underway. It is sometimes

difficult for evaluators to provide a definitive answer when a child

is very young because toddlers can be moody and quirky in expressing

independence at that age; so it is good that everyone is on top of

its potential to be an ASD early.

>

> My name is , I live in AL. My granson is believed to have the

low

> form of autism, he will be tested Sept. 8. He was 2 in June. He has

> speech delay, some temper issues,lines up his toys, but what is

really

> confusing me is he never did this thing of lining up his toys until

the

> last 5-6 months. He can count to 11 and has been able to for along

time

> now, he can say his A,B,C's, matches colors and the numbers and

shapes.

> My daughter wants to try changing his diet and see if this helps.

> Anyone have any recipes or other advice. Hes such a sweet boy.

Thank-

> you.

>

[Guest guest]

Hi ,

I don't know if I have anything new to try but just to let you know that you guys are not alone. We always thought Gage was so advanced when it came to learning because of his memory. When he started K-4 ( he had just turned 4 2 months earlier) we thought he would breeze through it. The teacher picked up immediately that Gage had significant motor skill issues. Couldn't decide if he was left or right handed and would keep switching. He couldn't use scissors for the life of him or even hold a pencil correctly.

When some testing was done, it showed he was more at a 2 yr old level then a 4 yr old. We had to buy special holders that would attach the pencil to his fingers and spring loaded scissors to teach him how to cut and it took over a year to teach him. Gage is now 7 and prefers to use his fingers to eat. He can now hold a pencil but cannot write his letters straight and still scribbles when coloring.

Sometimes it just takes time for them to catch up but the earlier you start the therapies, the better off your child will be.

Sue

From: kelly_hl <khale12057@...>Subject: ( ) New Date: Friday, August 29, 2008, 1:12 AM

Hi my name is . I have a 2 yr. old grandson they believe has Aspergers, he will be tested Sept. 8 to be sure. He is taking speech and therapy to learn to use a spoon & fork. My daughter & I were talking about changing his diet to see if it will help, any imfo, recipes etc. would be greatly appreciated. Any help would be great, this is all new to us. Thank-you.

[Guest guest]

IT IS POSSIBLE. 6 MONTHS IS A GREAT AGE TO BAND YOUR BABY. THEY HAVE A LOT OF GROWTH AT THIS AGE. I SAW RESULTS THE FIRST WEEK ALSO.

new

Hi there, I am new to this group. My son Italo was diagnosed with plagio from 2 months old. He is now 6 months and was fitted for his helmet on August 29th. He doesn't mind wearing it at all. Today when he had his bath I noticed an improvement already - could this be possible or is it just me wishful thinking ?Thanks - Tammy

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new

[Guest guest]

I thought the same thing when I took my son's helmet off. He got his on Aug. 29th also. Has yours started to smell already? We are in a Starband.

From: Mr. & Mrs. <reannarose2003@...>Subject: newPlagiocephaly Date: Wednesday, September 3, 2008, 5:20 PM

Hi there, I am new to this group. My son Italo was diagnosed with plagio from 2 months old. He is now 6 months and was fitted for his helmet on August 29th. He doesn't mind wearing it at all. Today when he had his bath I noticed an improvement already - could this be possible or is it just me wishful thinking ?Thanks - Tammy

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new

[Guest guest]

Smell is an understatement. I only noticed it today - do you know of any solutions for the smell ? He wears a Starband as well. I'm glad that you notice a change so quickly as well. Our next follow up is Sept. 10th.Tammy Knapp Fusillo <fsu77noles@...> wrote: I thought the same thing when I took my son's helmet off. He got his on Aug. 29th also. Has yours started to smell already? We are in a Starband. From: Mr. & Mrs. <reannarose2003 (DOT) ca>Subject: newPlagiocephaly Date: Wednesday, September 3, 2008, 5:20 PM Hi there, I am new to this group. My son Italo was diagnosed with plagio from 2 months old. He is now 6 months and was fitted for his helmet on August 29th. He doesn't mind wearing it at all. Today when he had his bath I noticed an improvement already - could this be possible or is it just me wishful thinking ?Thanks - Tammy Be smarter than spam. See how smart SpamGuard

is at giving junk email the boot with the All-new

Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

[Guest guest]

Welcome!

And yes, it is totally possible! He's young and growing every minute!

It is an amazing transformation, at least for us.

Enjoy!

8 1/2 mths old, DOC band #2, banded since 5/15!!!!

[Guest guest]

Hi! I am new to the group also. My son is 6 months old and

just received the STARband on August 28th. I thought I could see a

difference tonight as I was bathing him but thought I must be crazy

until I saw your message! The band is smelling already despite

scrubbing it every night with alcohol and bathing the boy and washing

his hair. has also adapted really well.

Kelley

>

> Hi there, I am new to this group. My son Italo was diagnosed with

plagio from 2 months old. He is now 6 months and was fitted for his

helmet on August 29th. He doesn't mind wearing it at all. Today when

he

had his bath I noticed an improvement already - could this be

possible

or is it just me wishful thinking ?

> Thanks - Tammy

>

>

> ---------------------------------

> Be smarter than spam. See how smart SpamGuard is at giving junk

email

the boot with the All-new

>

[Guest guest]

Try washing your child's hair is some good smelling shampoo; L'Oreal and

Suave both make kids shampoo in different fruity flavours. That seemed to

help with the smell. Also, if you can, put the band outside in the sun to

dry after you wash it. For some reason the sun air drying it helps with the

smell as well.

Molly

Novato, California

Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 5.5

, 8.5

Re: new

Hi! I am new to the group also. My son is 6 months old and

just received the STARband on August 28th. I thought I could see a

difference tonight as I was bathing him but thought I must be crazy

until I saw your message! The band is smelling already despite

scrubbing it every night with alcohol and bathing the boy and washing

his hair. has also adapted really well.

Kelley

>

> Hi there, I am new to this group. My son Italo was diagnosed with

plagio from 2 months old. He is now 6 months and was fitted for his

helmet on August 29th. He doesn't mind wearing it at all. Today when

he

had his bath I noticed an improvement already - could this be

possible

or is it just me wishful thinking ?

> Thanks - Tammy

>

>

> ---------------------------------

> Be smarter than spam. See how smart SpamGuard is at giving junk

email

the boot with the All-new

>

------------------------------------

For more plagio info

[Guest guest]

Corlee,

Welcome to the group. I hope you get as much out of this wonderful

forum as I do.

Hon, I am not the veteran that you are to this disease, but I hope

the new combination of drugs helps tremendously. Come on South, we

would love to have you.

Shirley

--- In , " Neva Weatherly " <corlee_us@...>

wrote:

>

> Hi, I am new to this group and hope to learn additional info on RA

and

> fibromyalgia. I have had RA for 32 years. My first 20 years I took

> placquinal and was in remission. Then one day it quit working and

I

> lost the use of my arms and hands. I went to a rheumatoloqist then

and

> was put on remicade and methatrexate. I quit working and we moved

to

> where I could do water arobics. Spring and fall are awfull-I flair

and

> have to go on predisone and just gain more weight! We have just

bought

> a motorhome and want to go full time rving. I changed to Embrel

with

> methotrexate, it seems to be working ok. I found out last summer

that I

> have fibro also,but have not been giving anything for it except

Fibro

> malic and acetyl-L Carnitine. I hurt now and want to head south. I

> don't know if it will be hard with traveling or not. Have any of

you

> done it? My feet hurt all the time--is it RA or Fibro? Hope to get

to

> know you all.Corlee

>

[Guest guest]

I am not an expert but I think feet hurting is RA not fibro.  Mine started in my

hands and feet and my rheumatologist x rays them both to keep an eye on them. 

Welcome and hope this group helps.

 

[ ] Re: new

Corlee,

Welcome to the group. I hope you get as much out of this wonderful

forum as I do.

Hon, I am not the veteran that you are to this disease, but I hope

the new combination of drugs helps tremendously. Come on South, we

would love to have you.

Shirley

--- In @gro ups.com, " Neva Weatherly " <corlee_us@. ..>

wrote:

>

> Hi, I am new to this group and hope to learn additional info on RA

and

> fibromyalgia. I have had RA for 32 years. My first 20 years I took

> placquinal and was in remission. Then one day it quit working and

I

> lost the use of my arms and hands. I went to a rheumatoloqist then

and

> was put on remicade and methatrexate. I quit working and we moved

to

> where I could do water arobics. Spring and fall are awfull-I flair

and

> have to go on predisone and just gain more weight! We have just

bought

> a motorhome and want to go full time rving. I changed to Embrel

with

> methotrexate, it seems to be working ok. I found out last summer

that I

> have fibro also,but have not been giving anything for it except

Fibro

> malic and acetyl-L Carnitine. I hurt now and want to head south. I

> don't know if it will be hard with traveling or not. Have any of

you

> done it? My feet hurt all the time--is it RA or Fibro? Hope to get

to

> know you all.Corlee

>